IEEPO-ov dokument ‘Humaniziranje zdravstvene skrbi: Poziv na transformacijske promjene', na osnovi podataka iz ankete provedene među pacijentima, prikazan je na događaju iz novembra: ‘Think Global, Act Local’ (Misli globalno, djeluj lokalno); okupivši pacijente iz cijeloga svijeta, u uistinu međunarodnoj razmjeni! IEEPO dokument je dostupan na: IEEPO.com na 5 jezika, a još dva bit će dostupna...
Uključivanje pacijenata i njegovatelja: CARAMBA fokusne grupe i projekt AL amiloidoza Trenutno tražimo pacijente (ili njegovatelje) koji: 1. su prethodno sudjelovali u CAR-T ispitivanju i koji mogu podijeliti svoje iskustvo s nama. MPE provodi dva istraživačka projekta kojim prikuplja podatke o perspektivi pacijenta o · ishodima o kojima izvještavaju pacijenti u CAR-T kliničkim ispitivanjima · socioekonomskom teretu i utjecaju liječenja...
U nastavku možete pročitati i pogledati planirane aktivnosti UICC-a (UNION FOR INTERNATIONAL CANCER CONTROL). Dražen Vincek With less than a month to go, it's time to get busy, to plan and share your World Cancer Day activities! This World Cancer Day, 4 February 2022, we want to raise awareness about the equity gap that exists in cancer care everywhere, and negatively affects people from...
MPN Advocates Network, December 2021 MPN HZ Virtual Conference 2021 This year, MPN Advocates Network (MPN AN) had the 6th International MPN Horizons Virtual Conference 2021 which attracted high interest with more than 150 registrations from 50 countries from all over the world. The 6th MPN Horizons Conference Programme consisted of 3 half days with around 60 daily...
Opća skupština Ujedinjenih naroda usvojila je 16. prosinca prvu ikada Rezoluciju o 'Rješavanje izazova osoba koje žive s rijetkom bolešću i njihovih obitelji'. Ova prekretnica je očitovanje istinske želje 300 milijuna ljudi koji žive s rijetkom bolešću u cijelom svijetu da budu priznati i službene obveze 193 države članice UN-a, uključujući 27 država članica Europske unije, da podrže politike rijetkih...
UICC Newsletter December 2021 Together we can close the care gap: human rights, UHC and cancer care Dr Cary Adams, CEO of UICC, explains how improving cancer control and providing access to life-saving services for all populations are steps towards Universal Health Coverage and supports the right to health for all. Read more Tobacco industry interference in policy decisions undermines effective control UICC offers insight...
The Voice of Rare Disease Patients in Europe "Corona-proof Christmas with mommy" PKAN, Netherlands "Make your most cherished desire" SMA type 2, Ukraine "Le temps d'un rève" Williams-Beuren syndrome, France The Board of Directors and the staff of EURORDIS wish you a Happy New Year! Le Conseil d’administration et toute l’équipe d’EURORDIS vous souhaitent une bonne et heureuse nouvelle année...
What's next? At the end of a productive meeting, day, or week, I'm always asking myself, "what's next." Next on my calendar, next on my list, next on the agenda. Last year, I recognized that to get to what's next as a foundation, I first had to learn, listen, and prepare. I learned about the foundation's core research mission...
U nastavku možete poslušati ekskluzivni interview s profesorom Rubenom Mesa, koji govori o najnovijim novostima s ASH-a 2021., a odnose se na MPN – mijeloproliferativne neoplazme. MPN News from ASH 2021 Dear MPN Advocate Network Community, We are thrilled to share with you the latest MPN News from ASH 2021. Please take a moment to listen to the exclusive interview...
Cronic Myeloid Leukemia Patient Group Advocates CML Advocates Network, December 2021 Global Leukemia Patient Experience Survey 2021 We need your collaboration! Can you please help us share the Global Leukemia Patient Experience Survey with your contacts and patient groups? If you have a leukemia diagnosis, don't miss the opportunity of joining the global research and contribute to create patient-based evidence in leukemia....
MPN Research Foundation nedavno je podnio ovo detaljno izvješće Američkoj Upravi za hranu i lijekove (FDA), koje je rezultat intenzivnog vanjskog sastanka o razvoju lijekova usmjerenog na pacijente čiji su domaćini bili u rujnu 2019., s suradničkim zagovornicima u MPN-u. The MPN Research Foundation is thrilled to share with you the "Voice of the Patient Report on Myeloproliferative Neoplasms."...
Dear friends, colleagues and supporters, As we reflect on the past year, we want to extend a heartfelt thank you to our inspiring members, dedicated Board, generous sponsors, and valued stakeholders. The biggest thank you, however, goes to my amazing colleagues at Myeloma Patients Europe (MPE), who every day work tirelessly to improve the lives of patients across Europe....
Što je MDS i kako determiniramo prognozu? U organizaciji MDS Alliance održan je zanimljiv webinar u kojem je američka hematologinja Jamile Shammo govorila na temu što je MDS i kako determiniramo prognozu. MDS je prepoznat početkom 20. stoljeća kada su liječnici uvidjeli da je dio pacijenata razvio anemiju otpornu na liječenje, a dio njih je razvio leukemiju. Ovaj sindrom...
